Why we founded Parents In Needby chair, Catherine Bailey
Today I saw a man collecting for a charity that supports autism was wearing a jacket with the words “Until we understand” which is what I think we are all looking to do. Although I am by profession a Television and film producer, I am here today to share my experience with you as a parent of a child with autism, and as a founder of a charity, Parents in Need.
When my son, Jamie, was born, like all parents, we dreamed of the successful life and career he would enjoy.
But then our lives changed forever in a way that no family can ever prepare for.
“Special Needs”. The diagnosis of Special Needs is an umbrella beneath which, a staggering array of diagnoses are squeezed.
Following diagnosis parents are immediately hurled into an unknown world of confusing contradictions, bureaucracy and loneliness. Suddenly they have to make sure that their child receives the help, therapy, schooling, and inclusion they need and deserve. They are expected to search for appropriate care; seek acceptance in the extended family, school and community; plan for an uncertain future and, most difficult of all, adjust their own expectations.
If strategies are not put in place families are seriously at risk. Relationships often break up. Siblings suffer. The extended family doesn’t react in a supportive way or doesn’t know how to. The effect on the whole family can be devastating. It cannot be underestimated how stressful, isolating and baffling this time can be.
Let me give you an idea of what it is like. You give birth to a child who seems perfect in every way and then gradually you begin to realize that something is different.
You start pretending. Pretending that everything is fine. Friends and family tell you not to worry, that babies develop at different rates and you want so badly to believe them. To believe that it cannot happen to you but deep down you know it can. You know and dread the truth.
You have friends with children the same age and at first when they are tiny there seems little difference. But then you start noticing that they are different. Your child is not meeting the ‘milestones’ and you worry. You see your friends pretending not to see, reassuring you that your child ‘will catch up’. And again you pretend to believe because you will do anything rather than face the facts.
Then when you get the diagnosis and you plunge into a dark pit of loneliness and despair. You mourn for the baby you thought you’d had.
You reach a point where you want to tell friends and family, but they don’t really get it. And a part of you doesn’t want them to “get it” because you don’t want their pity.
You don’t know which way to turn as the people you expect to help often do not or cannot. You are left wondering what on earth to do next. You do some research. Grasping at websites and books – not really wanting to read them because you are forever hoping that the diagnosis is wrong and that it will all go away. But it doesn’t.
At first you can’t believe that you may have to fight for your child’s future, to find the right education provision for them. You go to meetings full of angry parents who tell you you will have to go into battle. Surely not, you have done nothing wrong, you just want the best for your child and you are a reasonable person.
But before you know it you are in a fight you didn’t begin nor ever imagined yourself being in. And you don’t know who to turn to or where to start. You are watching your child suffer, your child is bewildered and frustrated in their need to communicate, but cannot. They live somewhere else, on a different pathway, on a different planet.
So pull yourself together and rationalise:
Surely there must be a higher authority who will help and listen?
But no, the decision taken on the future of your child is made by someone who is paid by you as a taxpayer, someone who has little or no idea of what it is like living with a child with special needs who has never met your child.
Someone who is more influenced by cost cutting and bureaucracy than caring and understanding. That person decides that your child is going to go to mainstream school even though, you already know that won’t work and will only increase his isolation and yours.
So you dig in and take the battle further. You are told in order to apply to a specialist school you will need independent assessments; reports from an Educational Psychologist; a Speech and Language Therapist and an Occupational Therapist – oh, and you will need a lawyer as well…
I have heard so many stories since my journey began. Every child is different but every struggle is strikingly similar. Our child was diagnosed with autism. It is hard enough when dealing with a child on a daily basis, on any level, but the invisibly disabled are often misunderstood.
Tantrums and meltdowns especially in public are seen as the parents not controlling their child. The child’s frustration and fear is often seen as bad behaviour. My son once had a meltdown because someone was sitting on “his” seat on the bus. Parents are misjudged by other parents who tut and turn away, which leaves them feeling isolated and somehow a failure.
I recently saw a little boy wearing a t-shirt with the words “I’m not badly behaved I’m autistic” blazened on his front. I admire such parents who are prepared to speak out and stop making excuses. I don’t see parents saying I’m sorry my child is in a wheel chair because they already know everyone will understand that their child has a disability.
With autism anxiety and flexibility is an on-going challenge for all the family to manage. Siblings suffer when they can’t join in in activities because their brother or sister is unable to do them.
Not because their brother or sister wont do something, but because they simply cannot. Their brain is sending too many anxiety signals to be able to cope.
So the family ends up staying at home or going to the same place repeatedly where their child feels safe. These are all brakes on family life.
My family has not been to a park or a beach for years because my son is so anxious that a dog might run toward him. Unpredictable behaviour is his worst nightmare. Knowing exactly what is going to happen next is the best strategy for him and many like him. Unfortunately life doesn’t always go exactly to plan.
At the age of five we took our son out of mainstream school where he was distressed and failing. We paid for something called Applied Behavioural Analysis where a tutor spends 30 hours a week in your home with your child.
The process has proved to be successful but there is also a downside. Some of the tutors are self-taught and so it is potluck who it is who comes to your house and into your life. The therapy is intense and oh I forgot to say, its anywhere between £45 and £60 per hour.
But my son could not speak and according to the doctor who diagnosed him he probably would never speak. Unbelievably, within three months of home tutoring with an ABA tutor he did. He started to say some single words. Gradually he strung some together. It was only when he saw words written down that they made sense and very quickly he learned to read and write and now can spell almost perfectly.
Meanwhile we searched for the appropriate school for him. We found the right fit, which meant selling our house and moving to the other side of London.
We never questioned the move, even though we were happily settled with a primary school backing onto our garden where we thought both our sons were going to go attend. The independent assessments we needed to go to tribunal were costly around £1500 for each report.
We pressed ahead and moved house. For our son to have the Speech and Language therapy and Occupational Therapy he needed in a specialist school was going to cost £5,000 per year more than it would cost to send him to mainstream.
Our solicitor phoned the barrister acting for the Local Authority to say that we would pay the difference. The barrister’s reply was surprising to say the least. The LA had instructed him to take this case all the way to court. His remit was to win. He declined our offer.
Early intervention for children with special needs is crucial. The earlier you can start helping with the right therapies the more chance you have that your child will grow up to be a valuable member of society. The longer they are ignored the more likely in the long term, that they will end up in residential care, which incidentally, can cost anything between £300,000 and £700,000 per year.
A false economy if ever there was one.
But the long-term future of a child does not appear to be the priority of a council as they seldom look beyond the next year’s budget. And as each council has a different budget isn’t it time that Central Government took responsibility for these children up and down the country who need help?
Why should neurodevelopmental issues be any different from physical ones? Why are parents penalised in this way?
Our legal battle with the local authority continued over several years, as do most of these cases, and I won’t go into detail here. Our son made great progress in his new specialist school and an independent report from a psychiatrist who stated that –
To take him out of it would be ‘detrimental to his mental health’ seemed to be the last piece of evidence that clinched our case.
I cannot tell you what the sum total of the cost has been – it would be impossible to quantify the emotionally draining effect and the time consumed. As far as finance is concerned I have never added it all up, for fear of knowing the truth, but with the ABA tutors, the legal fees, the school fees and the cost of the tribunal we exceeded £100,000.
We were lucky that we could afford to pay. Jamie will always have his autism to contend with but he is a bright and confident ten year old boy who in spite of the diagnosis that he may never speak – never shuts up!
Perhaps many of you here have experienced the same fight with endless forms to fill in, assessments to arrange, paying for legal advice and fighting tribunals. And all just because you want your child to be educated, because you want your child to be happy because you want your child to reach their potential.
But some people don’t have the strength, the resources, the time or the support to fight these battles. Parents of children with special needs and no means to strive for what is best for their child, find themselves isolated, confused, anxious and depressed. In some cases suicidal.
Children with life long disabilities turn into adults with life long disabilities. And they have the same difficulties accessing the right support as children do to lead the fulfilling lives that they deserve.
As adults, the thing that tends to define us is our jobs. In my opening remarks I told you what I do for a living. It is the thing that gives us the fastest route to social inclusion. Yet for people with neurodevelopmental disorders a job is very hard to find. The statistics for adults with autism are shocking. Only 16% of adults with autism are in full time employment, yet three-quarters would like to be. Four in ten have never worked.
I think it is important today to also think about what it is to be a parent of an adult with Special Needs and what we all may be able to do in our work environments to make our workplaces more inclusive and to think about what workers with differences can offer.
I am on the Council at The Royal Academy of Dramatic Art where we recently took our first autistic student on the technical course. There was some resistance at first until the staff realised how much their diligent student had to offer.
An increasing number of enlightened employers are thinking about how they may be able to make their recruitment processes more accessible to people with neuro diverse conditions and it’s good to see Accenture offering a platform for this kind of discussion.
Nobody should be alone when confronting these issues. And in my darkest hour I resolved that when we came through this nightmare we would make sure that there would be more support for parents in similar circumstances. Inevitably, I would get calls from parents who had just received a diagnosis for their child and felt their panic. How can you be re-assuring if you know they have neither the money nor the resources to take on the fight that is ahead of them?
This is why, just over a year ago, we set up a charity called Parents In Need to provide guidance as well as financial support to parents of children with Special Needs. We at Parents In Need are looking at the long term future and potential of these children and young adults, not just at next year’s budget.
We are made up of a group of parents and grandparents most of whom have some connection to a child with Special Needs. We started with no money at all but put on some fund raising events. In one year we raised £32,000 but we are now looking to approach the corporate sector for support.
Recently we funded our first case.
Edith is 9 years old, she has: Cerebral Palsy, and Autism. She is in mainstream school. This is clearly the wrong place for her as she is regressing. Her mother is on low income and suffering with blood cancer and is under current treatment long term.
We have given Edith a chance in life by funding the independent reports her mother needs to face a tribunal. She will now have accurate information, by professionals, who have first hand experience of her needs.
Early intervention is critical. It can save hundreds of thousands of pounds, an immeasurable amount of heartache and pain and ultimately, given the right support at the right time, many children who were once “a problem” will have the opportunity to contribute to society in a lifelong meaningful way.